'I'm still a woman': A qualitative study on sexuality in heterosexual women with Turner Syndrome

Abstract

Aim and objectives: The aim of this study was to describe and understand how heterosexual women with Turner Syndrome experience sexuality.

Background: Turner Syndrome is a genetic condition that is the result of one of the X chromosomes missing or partially missing, and it affects women of all ages. Turner Syndrome may lead to psychological, relational and sex life disorders.

Design: This is a qualitative study, and the COREQ checklist was employed to report on the current study.

Methods: The study was conducted in a region of southern Spain. Convenience and snowball sampling were used to recruit 18 women, aged 22-51 years, who had been diagnosed with Turner Syndrome. Participants' experiences were explored through semi-structured interviews between January and May 2021. Thematic analysis was used for data analysis.

Results: Three main themes and eight sub-themes emerge from the data analysis: (1) Sexuality linked to corporeality, with the sub-themes: 'Discovering that your body is different', 'Social stigma limits one's sex life' and 'Fear of penetration surpresses sexual desire'. (2) Adapting one's sexuality to Turner Syndrome, with the sub-themes: 'Feeling like a woman' and 'Suffering from and adapting to comorbidities'. (3) When infertility overshadows sexuality, with the sub-themes: 'Prolonging childhood by ignoring sexuality', 'Fertility treatment: always a possibility' and 'Lack of specialised professional knowledge'.

Conclusion: Heterosexual women with Turner Syndrome suffer from sexual problems, delayed diagnosis and treatment, and lack of information. Unawareness and relational problems may also lead to scarce and late sexual relations, jealousy and a fear of being left. The women with Turner Syndrome refer to little self-exploration or masturbation as well as a fear of penetration.

Relevance to clinical practice: Understanding the experiences of sexuality in heterosexual women with Turner Syndrome is a challenge for clinical nurses, who could provide quality care to these women in contextualised services.

Keywords: qualitative research; sexuality; turner syndrome; women's health.